How did you first learn of PANS/PANDAS and what motivated you to begin treating children with PANS and PANDAS?
It was an accident. In 1999 a child of a friend, who was a pediatrician, had a condition nobody could explain so that is how it started. I found a small five liner in the literature referring to PANDAS and tried to contact the NIH. I did get in touch with them and was told they were doing some research on it. After that, I had kids were so incapacitated and had been through five or six institutions. I tried treatment for PANDAS, it worked, and from them on I continued to treat children who had PANDAS.
Do you ever treat children who did not have an abrupt or acute onset, and if so, do they respond similarly to children who did have an abrupt onset?
There has been an evolution of understanding of PANS and PANDAS. The first ten to twelve years, the sudden onset was a must. When a child starts having symptoms at two to three years of age, it is more difficult to recognize the onset. Certainly there are children who fulfill all the criteria aside from abrupt onset for whom treatment is successful.
Have you had any patients who had been diagnosed with autism who ended
up actually having PANS?
Yes, but let’s be specific on that. I have had a number of children who were initially diagnosed with PDD-NOS that later on turned out to be PANDAS.
And did their symptoms of autism remit with treatment for PANDAS?
Yes, their symptoms of autism went away with treatment.
What about children who had been diagnosed with bipolar disorder, oppositional defiant disorder, etc?
Any time you have children with a long history of neuropsychiatric symptoms, you will have a whole slew of diagnoses--anxiety, oppositional defiant disorder, bipolar disorder, etc. That really has been the story. You have all these diagnoses established at different times. The symptoms evolution of PANDAS over time differs from child to child. A child can have one episode where OCD is the main feature. The next episode could be tics or irrational fears. Children's symptoms do change from episode to episode and advance with age.
What are the ages of the youngest and the oldest PANS patients you’ve ever diagnosed?
The youngest patient with confirmed PANDAS was 3.5 years old and presented with acute anorexia. The oldest was 48. Up until 2010, PANDAS was considered to be exclusively pediatric. I started to question this and found that these children do not outgrow PANDAS. It doesn’t go away so they retain the symptoms. It appears that unless children with PANDAS are treated, it is a lifelong condition.
In your opinion, why hasn’t PANS/PANDAS moved beyond controversy?
I think recently, as recently as the past two to three years, it has moved beyond controversy. I think one of the reasons it has been difficult is we still have the division in medicine into mental and physical symptoms. There is mental illness which in my opinion doesn’t exist. There is physical illness with mental illness symptoms. Children with PANDAS often have no physical symptoms of illness so they’re immediately pronounced behavioral. There is the implication that the child could do something about their behavior if they tried hard enough. That is unfair.
The second problem is there is a division between mental and physical illness that is deeply rooted into society. There are two groups of patients and they are treated differently. In mental illness, there is usually not normal testing, lab testing, etc. that is required in physical illness. Again, switching camps is very hard.
What percentage of your patient population requires IVIG?
Again it is a matter of age. In my opinion, and I have followed patients as long as 19 years, it appears all patients with a diagnosis of PANDAS eventually do need IVIG as the ultimate
resolution. Yes, you can put these patients into remission with antibiotics and steroids, however, based on my experience, the occurrence is almost inevitable later in life. Let me give you an example. A number of years ago, I had a child with acute onset at eight years old, returning from Europe. We treated with antibiotics and he did well. It happened that I followed the child as pediatrician at that time. I was witness to his perfectly normal health for five to six years. At age 14, he woke up with full blown picture of PANDAS. I believe all children with PANDAS will need IVIG sooner or later.
How often is more than one course of ivig necessary?
Again historically, it all depends on what is done prior to IVIG. Until 2010 we basically would treat with IVIG if the child's clinical picture required it. I saw a 18-20% recurrence. In 2010 we started look at recurrence more closely and tonsils and adenoids were suspected as a trigger. We started to employ tonsillectomy and adenoidectomy before treating with IVIG. Preliminary evidence is 5% or less are now needing repeat IVIG. Somewhere between
one in ten and one in twenty children.
Do you see a difference in outcomes when children are treated promptly
versus when they have been sick for years?
Actually that is not necessarily the case. It appears the effectiveness is solely dependent upon the age, not the duration, intensity, or quality of symptoms. From my population, in boys between the ages of six and 13, and girls between the ages of six and 12 who are treated with IVIG, the response rate appears to be 75-77%. After twelve in boys and thirteen in girls,the effectiveness starts slowly waning down. The effectiveness dissipates entirely by late twenties or early thirties. The importance of early diagnosis is not necessarily related
to better outcomes. Clearly improving quality of life for children and parents because they know what they are dealing with is an importance that should be attached to early diagnosis.
Is there any new research you're excited about that you think will improve quality of life for children with PANS and PANDAS?
There are a number of things we are looking at this moment. Honestly I am excited about any improvements we can get. One thing that is being looked at is if a specific strain of group A strep is causing PANDAS. Group A strep is not a unified group of germs. There are 120 different strains so the question before us is, is there a particular strain that is likely to cause PANDAS? The second thing is the possible genetic contribution to the development of PANDAS. We do have anecdotal evidence that susceptibility to PANDAS is likely inherited but
we don’t have specific data. Finding this out could help a great deal.